HIV Prevention Literacy: Remembering What We Have Learned

Every two years, the International AIDS Conference gives us a chance to take stock of where we are in our struggle against this epidemic – of where we have come, and where we need to go. We have learned many important lessons in responding to HIV and AIDS over the past 35 years (lessons that I fear we sometimes forget), and this session provides us with a key opportunity to remember some of the most important things that we have learned:

First, while we need to recognize (and celebrate) the important accomplishments that we have achieved in the scale-up of the global response to HIV during recent decades, we also need to be realistic about the challenges that still exist.

Let me give just a few examples:

Today, in 2016, 20 years after Vancouver, roughly 50% of the people in the world who need access to HIV treatment still don’t have it. We should celebrate the number of people on treatment, but we can never forget those who still don’t have access – and the pain, suffering and death that they have been subjected to because of the world’s inability to take the necessary action.

Also, after massive increases in funding for the global response to HIV, available aid has plateaued in recent years – and we now know that in 2015, aid for HIV declined for the first time in the past 5 years, falling from 8.6 billion US dollars to 7.5 billion – a significant drop that signals a level of global complacency about the epidemic. At least in part, it is fair to conclude that this complacency is a result of the premature declaration of ‘the end of AIDS’ on the part of many of the leading agencies and officials responsible for ‘administering the epidemic’. It is a failure of leadership.

Finally, while we have seen great progress in developing new prevention technologies,collectivelywe have failed miserably in making them available where they are most needed. We have failed to build and sustain community-based education programs. In their place, we have substituted slogans, such as ‘Treatment as Prevention’ (even though we treat only 50% of those who need it) and programs, such as ‘Test and Treat’ (even though beleaguered health and social systems in poor countries and communities have repeatedly failed to adequately meet the needs of those who test positive for HIV). Worse yet, such approaches have increasingly become a kind of smoke screen that covers up the reality of ‘scale-down’ (rather than ‘scale-up’) in many countries – a smoke screen that has too often served as a justification for cutting funding for meaningful prevention programs based on community engagement and ownership.

With this backdrop, the second point that I would like to make: In my view, the challenges of HIV prevention today parallel the history of HIV treatment roughly 15 years ago (with increasing biomedical options, but inequitable access, even though efficacy improves when strategies are used in combination).

It is especially important to recognize that expanding treatment also required relatively sophisticated knowledge at the grassroots level about available treatment options, as well as the need for community-based programs and community ownership in relation to antiretroviral treatment. Treatment access had to be understood as a social and political process, rather than just the availability of drugs.

As treatment scale-up began, groups like the Treatment Action Campaign here in South Africa (and other community activist groups across the global South) developed ‘treatment literacy’ approaches as a way of advancing scale-up through the development of community empowerment and community-based expertise necessary to make treatment access a reality.

They recognized that access could not be understood as a gift given by benevolent policymakers, but as a process that is constructed collectively – as much by affected communities advocating for their own needs, as by the well-intentioned acts of enlightened administrators. Access had to be guaranteed by the recognition of fundamental human rights – rights to life, to health and wellbeing.

This brings me to my third point: Today, we urgently need to develop a focus not only on treatment literacy, but also on ‘prevention literacy’ if we are to take advantage of the growing range of prevention options.

We need to reframe and reconceive HIV prevention as a complex praxis that goes beyond delivering health information and health commodities, but that must be based in the promotion of human rights – including the right to access the prevention options that make sense from the perspective of those who use them.

We also need to raise the visibility, support for, and social inclusion of what have euphemistically come to be described as ‘key’ populations – viewing them not simply as docile bodies that need to be ‘brought along’ (as opposed to being ‘left behind’), but recognizing them in their own right, and with their own names, as proud communities capable of caring for themselves if given the respect and the social protection that that they deserve.

What these communities need most is not patronizing rhetoric on the part of policymakers and program managers, but transformative structural interventions (for example, law reform, legal services, adaptation of health services, capacity building of health providers), and, above all, access: access to care and treatment, to be sure, but also access to the full range of prevention options that exist today (and not just those that government bureaucrats or development aid technocrats think are most cost effective or morally acceptable).

In short, based on everything that we have learned about this epidemic over the course of the past 35 years, truly achieving prevention literacy will require a number of key things – but they are things that are do-able if we can muster the political will to do them:

We need to raise awareness and recognition of community-based expertise – that expertise doesn’t only belong to scientists or public health specialists, but also exists in the grassroots communities that are most directly affected by the epidemic;

We need to build knowledge and understanding of all available prevention options – the full range of existing approaches, the complete toolkit that we now have at our disposal;

We need to ensure grassroots empowerment to advocate for, access, and effectively utilize the full toolkit of available prevention approaches, choosing those that make the most sense from the perspective of those who use them. Experts can help to inform those choices, but should never assume that they can make them on behalf of others. In the end, the choice must always be made by those who will put prevention methods to use in their own lives.

Above all, we need to recognize that the most affected communities must be at the center, and in the lead of this response, if we are ever to truly have real hope of ending the HIV epidemic.

[1] President and Director of ABIA, the Brazilian Interdisciplinary AIDS Association, in Rio de Janeiro, and Professor of Sociomedical Sciences and Anthropology at Columbia University in New York City. Presented at AIDS 2016, the 21st International Conference on AIDS, Durban, South Africa, 18-22 July 2016.